Part lV
Long-term Care
And Supportive Housing
THE FAMILY CONVERSATION #4
MOVING TO AN ADULT CARE RESIDENCE?
While many seniors can live safely and comfortably in their homes with some assistance for years, there may come a time when families need to consider moving their loved ones into some type of supportive housing or long-term care facility. It’s emotionally difficult for everyone to accept this reality, but it’s also important to recognize when your loved ones need a higher level of care.
Once again, caregivers should consider holding family conversations with to discuss various supportive housing options for seniors. In New York State, an Adult Care Facility is defined in law as a facility that offers long-term, supportive residential care, and is licensed and overseen by the state department of health. Adult care facilities fall into three basic categories—enriched housing, adult homes and assisted living residences—but the terms can be confusing, because assisted living services also may be available in different kinds of facilities. And some assisted living residences may offer “enhanced services” for individuals with special needs, such as those with Alzheimer’s disease.
In general, supportive housing-and-services models offer various social and personal care services, but they do not include the level of skilled medical care provided in nursing homes.
As caregivers and their loved ones consider long-term care facilities, it’s important to understand the key benefits, challenges, and legal considerations of each option so they can make informed housing decisions.
This is also a good time for caregivers and other family members to review key documents with their loved ones, including their health care proxy, power of attorney, and living will. (See Part I of this resource guide.) In particular, if your loved one has serious health conditions, caregivers should consider another important document, known as a MOLST (Medical Orders for Life Sustaining Treatment). These medical orders, including instructions regarding “Do Not Resuscitate Orders” or “Do Not Intubate Orders,” are intended to honor a person’s wishes and preferences in providing quality end-of-life-care.
Completion of the MOLST form should involve conversations between the patient, the patient’s doctor, health care agent and family caregivers, with the goal of defining the patient’s preferences for life-sustaining care, reviewing possible treatment options, and ensuring shared, informed medical decision-making. The New York State Department of Health has approved a physician order form which can be used statewide by health care practitioners and facilities. The MOLST form, along with general instructions, checklists and an extensive FAQ document, is available on the health department website (www.health.ny.gov; search for “MOLST”).
A signed MOLST form should be transported with patients as they travel to different health care settings.
The MOLST form should be printed on bright “pulsar” pink, heavy stock paper. Hard copies of the card stock pink form (with all four pages printed landscape/double-sided on a single 11 inch x 17 inch sheet folded in the middle) can be ordered using a form that can be downloaded from http://www.compassionandsupport.org/.
SUPPORTIVE HOUSING OPTIONS
Enriched Housing
Enriched Housing is defined as an adult care facility whose operator licensed to provide long-term residential care to five or more adults, primarily senior persons 65 years of age or older, in community-integrated settings resembling independent housing units. Residents live in an apartment setting, which includes a bathroom, living room, and kitchen, and they have access to a package of services such as meals, housekeeping, laundry/linen service, transportation, socialization and recreational activities, some supervision and personal care assistance.
There are two models of enriched housing in New York State:
- The Program Model, where the operator of an existing apartment building is licensed to provide housing and services, allowing aging tenants to continue living where they are instead of relocating to a higher-care facility.
- The Facility Model, where the developer of a new multi-unit facility is licensed to provide services to all residents, whose functional frailty requires the assistance of the program—but not a medical condition requiring 24-hour skilled nursing, nor the chronic need of assistance from another person.
Adult Homes
Adult Homes are defined by law as adult care facilities that provides long-term, supportive residential services, activities, and personal care to five or more elderly adults and non-elderly adults with disabilities. Adult homes provide a private or semi-private room, private or shared bath, all meals, housekeeping and laundry service and 24-hour supervision, Long-term personal care services are designed to enable residents to maintain good health and hygiene, to carry out the basic activities of daily living (ADLs) and participate in the ongoing activities of the facility.
Assisted Living Residences
Assisted Living Residences are certified adult homes or enriched housing programs that are additionally licensed by the state health department to provide ongoing care and services for persons who cannot live independently and need assistance in the activities of daily living (ADLs), but who do not require around-the-clock nursing care or extensive medical supervision.
A residence must provide or arrange for housing, daily food service, 24-hour, on-site monitoring, case management services, an individualized service plan for each resident, and personal care services in a home-like setting of five or more adult residents unrelated to the assisted living provider. Assisted living residences may offer each resident their own room, a small apartment or shared space with a suitable roommate. Residents share common areas, such as a dining room or living room. They frequently offer services like transportation, planned activities, exercise and wellness programs.
Assisted living facilities will either offer a social or a medical model. In the medical model scenario, an adjoining nursing or sub-acute or rehab center is available if a person needs more medical assistance. Some assisted living facilities have more residents who are wheelchair-users, but most of those people must be able to get out of their wheelchair with relatively little help.
Different licenses will tell you what services a community can offer and the level of abilities of its residents. Assisted Living certification categories include:
- Basic assisted living for residents who are medically stable;
- Enhanced assisted living for residents who require a higher level of care, such as assistance in walking, getting out of a chair, or using medical equipment: and
- Special needs assisted for residents who require specialized services to address needs such as Alzheimer’s.
New York State law and regulations guarantee assisted living residents certain rights and protections and define their responsibilities. A list of the Rights of Residents is available on the Department of Health website (www.health.ny.gov/facilities/adult_care/).
Assisted Living Programs (ALPs)
The Assisted Living Program provides a higher level of residential and care services to people who are medically eligible for a nursing home, but whose needs can be met in a less medically intensive assisted living setting. Those who qualify for ALP can use Community Medicaid or Social Security income, and although the program is open to non-Medicaid eligible people, a large majority of participants are on Medicaid. Regulated by the state health department, the program is generally considered a unique win-win model, serving residents who prefer the increased social and recreation activities offered in assisted living facilities while saving money for the state, since it’s significantly less expensive than nursing home care.
For more information, click www.health.ny.gov/health_care/medicaid/program/longterm/alps.htm.)
Besides room and board, ALP services include personal care, supervision, case management services, housekeeping, home health aides, nursing, physical/occupational/speech therapy, adult day care, medical supplies and equipment, and emergency response services. ALP residents must not require continual nursing care.
Most assisted living facilities are not licensed to be ALPs. So far, there are only a handful of ALPs on Long Island:
Continuing Care Retirement Communities
Continuing care retirement communities (CCRCs) are New York State-approved senior complexes that usually offer living options supporting various stages of elder life. Spanning independent living, assisted living, and skilled nursing care in a single campus-like setting, CCRCs enable residents to age in a single community without having to relocate.
Continuing care communities offer a broad range of services and levels of personal care based on the needs of each resident over time. Usually, a resident has to pay an entrance fee before moving in, plus a monthly fee that covers services such as meal plans, housekeeping, scheduled transportation, maintenance-free living and planned social, educational and cultural activities and events. Residents’ housing and health care are covered under a life-care contract or under a long-term housing and health care contract. A CCRC’s monthly fee increases with higher levels of care. Health-related and nursing care are licensed and regulated by the New York State Health Department, and a community’s financial status and pricing structure are overseen by the New York State Insurance Department.
Nursing Homes / Skilled Nursing Facilities
A nursing home may the best option for some seniors, especially if they’re experiencing chronic, long-term health problems that cannot be managed by custodial caregivers at home.
Nursing homes, or skilled nursing facilities, are New York State-licensed residences that can offer sub-acute care—a level of skilled medical care “between hospital and home”—provided under the supervision of trained individuals such as registered nurses. Examples of skilled nursing services include intravenous injections, tube feeding, physical therapy, changing sterile dressings on a wound, and monitoring vital signs and medical equipment.
Nursing homes provide a room, meals, help with activities of daily living, recreation, and general nursing care to people who are unable to take care of their daily living needs. They provide a 24/7 protective environment for people who do not need to be in a hospital setting, but who can no longer safely live on their own and require full-time monitoring. They are Medicare and Medicaid eligible; to be certified by Medicare, skilled nursing facilities must meet strict criteria and are subject to periodic inspections.
Before a person can be admitted to a nursing home, the state health department requires them to undergo an assessment to determine their physical, psychological, and social needs. The assessment forms are called the PRI (Patient Review Instrument) and the Screen, which must be completed by a certified public health nurse and are valid for a period of 90 days. Forms can be obtained at a hospital, from a nursing home, or from the county Department of Social Services.
If a person enters a nursing home directly from a hospital, the hospital’s social worker and discharge planner complete the PRI and Screen and make the necessary transfer arrangements, working closely with area nursing homes. If a patient enters a nursing home from their own home, the PRI and Screen can be obtained from the local Visiting Nurse Service or a certified home health care agency whose staff is qualified to make these evaluations. There are also professional individuals and agencies who specialize in long term care placement and are qualified to help families handle this process. (Ask in advance about their fees.)
Choosing a Facility
Patients and their caregivers should feel free to ask questions regarding their options in selecting a skilled nursing facility. A Patient Care Plan is formulated by a registered nurse, in conjunction with a physician, for the optimal, on-going care and rehabilitation for each nursing home resident. They try to place patients in facilities that can provide the needed care and are reasonably close to where the family resides.
New York State regulations require that a hospitalized patient on Medicaid who no longer needs inpatient hospital care be placed in the first available bed within 50 miles of the patient’s home. By telling the hospital which nursing homes to apply to, the patient or family can try to influence the location of the eventual placement.
Admission Agreements
Each person entering a nursing home must sign an agreement before being admitted. Families are urged to obtain a copy of the agreement in advance and ask questions about it or consult a lawyer if anything is unclear.
A comprehensive admission agreement should:
- State the rights and obligations of residents of the facility.
- Specify how much money residents must pay each day or month.
- Detail the prices for items not included in the basic monthly or daily charge.
- State the facility’s policy on holding a bed if residents temporarily leave the home for reasons such as hospitalization or vacation.
- State whether the facility is Medicaid and/or Medicare-certified. If so, the facility must accept Medicaid payments when the resident’s funds run out or accept Medicare payments if the resident qualifies for Medicare coverage.
Residents’ Bill of Rights
Residents’ Rights is a listing of 19 rights, mandated by law, designed to give institutionalized people as many rights as possible to help keep control of their lives and maintain their “persona” or identity. Collectively, they provide a clear definition of what is required for good residential care. The rights are divided into eight categories:
- General responsibilities of the facility to the resident
- Admission rights
- Protection of legal rights
- Right to privacy
- Right to clinical care and treatment
- Residential rights
- Financial rights
- Transfer and discharge rights
For a copy of the booklet, Your Rights as a Nursing Home Resident in New York State, or visit the state Health Department website, www.health.state.ny.us (Click Health Facilities, then Nursing Homes).
Paying for Residential Care
The cost for adult care residential facilities can be dauntingly high. According to the Genworth 2018 Cost of Care Survey (www.genworth.com/about-us/industry-expertise/cost-of-care.html) , the average annual cost of assisted living in the New York metropolitan area is about $71,000 a year, while the average annual cost for a nursing home semi-private room is about $145,000.
And Medicare does not pay the largest part of these costs. Medicare will help pay for a short stay in a skilled nursing facility, but it will not pay for most personal or custodial care, so it is important for seniors and caregivers to include discussions about how to pay for long term care planning as part of their family conversations. (See Part I of this directory, “Long-Term Care Planning.”)
Primarily, older persons and their families pay the cost of assisted living, and because there can be extra fees for additional services, it’s important to find out what is included in the basic rate and how much other services will cost. Medicaid will pay for people who qualify for the Assisted Living Program, but there are only a handful of such programs on Long Island. (See Assisted Living Program.) To avoid draining retirement savings, families (in consultation with financial advisers) might consider other funding sources their loved ones might have available, such as long-term care insurance. These policies, generally purchased when a person is younger, are specifically designed to help pay for the cost of services not covered by Medicare, Medicaid or other health insurance. Some life insurance plans have riders that will pay for long-term care, while others may be converted into “hybrid” policies offering coverage for either long-term care or death benefits. (See Part I, Long Term Care Insurance.)
Government programs. Medicaid or VA benefits may cover nursing home costs, provided that recipients meet a set of financial and medical requirements. For instance, when reviewing a Medicaid application, the local social services department will examine whether an applicant has transferred or given away any assets for less than fair market value during a certain time prior to the application, known as the “look-back” period. (Currently, the look-back period is five years.) If the Medicaid agency determines assets have been gifted during the look-back period, it will impose a “penalty period,” based on the amount of the gift, during which the applicant will be ineligible for Medicaid services and will be required to pay privately. In addition, “Community Medicaid” options may be available for qualified individuals to receive money for in-home care without meeting the requirements of a look-back period.
When considering such options, families should consult with financial advisers who understand Medicaid and VA benefits—and be aware that planning too far down the road also could be tricky, since government funding and regulations are continually under scrutiny by lawmakers in Washington and Albany.
MANAGING ALZHEIMER’S &
OTHER FORMS OF DEMENTIA
For caregivers, Alzheimer’s disease brings daunting emotional and physical challenges every day, particularly since most patients live with their families, not in institutions. Alzheimer’s affects more than 50,000 people in Nassau and Suffolk Counties–two-thirds of them women—and when someone suffers from this devastating disease, their caregivers may find themselves coping with their own sense of loss of a loved one—or just trying to get through the day.
The average span of the disease is seven years, but it can go on as long as 20 years. At the outset, it’s important to recognize—with the help of doctors—the early warning signs of the disease and the differences between dementia and other age-related changes. Perhaps your loved one is experiencing what’s known as Mild Cognitive Impairment or MCI. This condition may include losing things often, forgetting events or appointments, or having more trouble than others of the same age coming up with words.
Many discussions about memory loss refer to Alzheimer’s disease and “other forms of dementia.” What’s the difference? In a nutshell, dementia is a collective term for a number of conditions marked by the loss of mental abilities, primarily memory difficulty, with additional problems in cognitive functioning such as language, attention span, problem solving, judgment, or organization. Alzheimer’s is the most common form of dementia. The disease causes large numbers of brain cells to die, and generally begins near the hippocampus, the brain’s memory center, spreading to other areas of the brain. After age 65, the risk of Alzheimer’s doubles every five years, and after age 85, the risk reaches nearly 50 percent.
Some medications can help treat the symptoms of Alzheimer’s, keeping memory loss from getting worse for a time, but there is no cure yet. And some medicines may have side effects and not work for everyone.
There are many other possible causes of dementia, including emotional problems like depression; kidney, liver or thyroid problems; bad reactions to sleeping pills or anti-depressants or anti-anxiety medications; sleep disorders such as sleep apnea; or vitamin deficiencies. Vascular dementia is caused by small strokes or changes in blood supply to the brain.
Dementia tends to develop slowly, so if your loved one’s mental state changes relatively suddenly over a short period, that’s not the usual picture of a degenerative disease. But distinguishing between Alzheimer’s and other potential causes of dementia is not a job for amateurs, so if you’re worried consult a doctor. Doctors will likely ask a series of questions, such as how well can the person do everyday tasks like driving and shopping for food? They’ll ask about your family’s health and review your loved one’s medicines, also and may provide a series of tests to check memory, problem solving, counting and language skills and suggest a brain scan that might indicate problem areas in the brain.
Early detection matters, so to help caregivers identify potential problems, experts have assembled a list of warning signs for Alzheimer’s—comparing them to signs to typical age-related changes (for more, see Alzheimer’s Association resources at www.alz.org). Some examples:
Forgetfulness of Normal Aging:
More Serious Memory Problems
If your family is faced with a diagnosis of dementia, here is a series of steps to help caregivers create a plan:
- Schedule a family meeting. Family members need to be open about their feelings and anxieties, but also the need for a realistic plan, faced with the fact that their loved ones will no longer be able to care for themselves sometime in the future.
- Contact groups for information and services. There is a growing number of organizations and agencies that offer information, programs, services and publications aimed at helping Alzheimer’s caregivers and their families (See resources below.)
- Find a local Alzheimer’s support group. Sharing information and experiences with fellow caregivers—especially given the challenge of communicating and managing day-to-day tasks—can help bolster this often long and emotional journey.
- Consider using adult day care services. A number of local assisted living and other facilities offer adult day programs aimed at providing provide short-term daily care and activities for those with dementia, as well as respite for family caregivers.
- Consult home health care agencies about options. Talk to agencies and geriatric care experts about your loved one’s capabilities and what level of care is needed—and what alternatives are available if home care is appropriate.
In some instances, your family might consider placement of a loved one in an adult residential facility designated as a “memory care community.” These facilities are certified to provide care for aging adults with dementia, with staff members trained to communicate with these residents and help manage dementia symptoms like sundown syndrome, wandering, or combativeness. Be sure to ask a lot of questions about staffing ratios, planned and supervised activities, and what a patient’s day will be like. Stimulation through mental and physical activities can help even severe cases of dementia. If the facility also has an assisted living unit, memory care patients may be included in activities with other residents.
Ultimately, the goal for Alzheimer’s caregivers is to help their loved ones live as normal life as possible. Keep up every day routines. Focus on what the person can do, not what they can’t—successful activities they enjoy, such as listening to music or visiting a garden, and help these individuals remain connected to the world around them. Try to minimize disorienting disruptions; keep your loved one in a safe, comfortable location.
Don’t get upset at yourself for being tired or frustrated. Even if your loved one appears disconnected, look at these days with mom or dad as a gift.
Here are several resources that offer support services for Alzheimer’s caregivers:
Here few resources that offer help in dealing with a loved one's dementia:
Here are other resources that deal with Alzeimer's and other forms of dementia
HOSPICE CARE
There may come a time when caregivers recognize that a loved one is terminally ill and the family must choose the most appropriate health option for that person. For many people, that option may be hospice care.
Hospice is a comprehensive program of care, support and treatment for individuals who are terminally ill and have a life expectancy of six months or less. The goal of this program is to provide comfort for patients and their families, not to cure illness. Hospice care emphasizes pain control, symptom management, and emotional support rather than life-sustaining treatment. In most cases, care is provided in the patient's home, but it is also provided in hospice centers, hospitals, nursing homes and other long-term care facilities.
Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations. If a person qualifies for hospice care, they can get medical and support services, including nursing care, medical social services, doctor services, counseling, homemaker services, and other types of services. As part of hospice care, patients will have a team of doctors, nurses, home health aides, social workers, counselors and trained volunteers to help them and their family manage their illness.
People who are eligible for the Medicare Hospice Benefit must have Medicare Part A coverage and meet these provisions:
- a prognosis from their regular doctor (or nurse practitioner), as well as a hospice doctor, that the patient is terminally ill and not expected to live more than six months;
- the patient’s acceptance of palliative care for comfort, instead of care to cure their illness;
- the patient (or representative) signing a statement choosing hospice care instead of other Medicare-covered treatments for a terminal illness and related conditions.
Hospice and palliative care are not the same. Like hospice, palliative care is provided to individuals who are chronically or terminally ill, and aims to improve quality of life, pain and symptom management—but it may be provided in conjunction with curative therapies and is not based upon the patient’s life expectancy or prognosis. Hospice care is a special kind of palliative care for patients who are either not being helped by active treatment or for whom the burden of their treatment outweighs any benefits. Medicare coverage for hospice is for patients expected to live six months or less, although under a current Medicare pilot program, selected patients at hospices in 40 states are allowed to receive hospice care while also receiving curative treatments from their doctors.
Typically, a family member serves as the primary caregiver and, when appropriate, helps make decision to seek hospice care for the terminally ill individual, after talking with other family members and doctors. To find a suitable hospice provider, caregivers can consult the patient’s doctor, as well as find lists of potential providers from various organizations or government agencies (See Resources below.)
Hospices aren’t required to be certified or accredited, but many obtain accreditation from organizations such as the National Hospice and Palliative Care Organization and other groups that set standards for participating hospices. Medicare only covers hospice care if the provider is Medicare-approved. Original Medicare will cover everything an individual’s needs related to their terminal illness, as well as health problems that aren’t related to that illness.
Once a person’s hospice benefit starts, the hospice team develops a care plan that meets each patient's individual needs for pain management and symptom control. The interdisciplinary team usually consists of the patient’s personal physician; hospice physician or medical director; nurses; home health aides; social workers; counselors or clergy; speech, physical, and occupational therapists, if needed; and trained volunteers.
Members of the hospice team make regular visits to assess the patient and provide additional care or other services. Hospice staff is on-call 24/7. Among its responsibilities, the team:
- Manages the patient’s pain and symptoms.
- Assists the patient with the emotional and psychosocial and spiritual aspects of dying.
- Provides needed medications, medical supplies, and equipment.
- Coaches the family on how to care for the patient.
- Delivers special services like speech and physical therapy when needed.
- Makes short-term inpatient care available when treatment becomes too difficult to manage at home, or the caregivers need respite time.
Patients always have the right to opt out of hospice care at any time for any reason, for example, if their health improves. But even if a patient lives longer than six months, they can continue to receive hospice care, as long as a hospice doctor or medical director re-certifies that they’re terminally ill.
Hospice care is designed to provide comfort for terminally ill patients, but also support family caregivers. Hospice provides a level of care that may be difficult to get at a time when your loved one needs special care. It may require caregivers to learn new tasks, accept a different plan of care, and reflect their own family’s values during a deeply personal stage of life.
Hospice not only offers counseling during a loved one’s illness, but provides optional bereavement support for a year after the death of the family member.